It’s been over 16 months since the stem cell transplant to put my MS in remission.  And I’m still in remission.

Those of us in the HSCT family love to see how our hair is growing.  I’m no exception I anxiously look forward to seeing pics of another HSCT vet, Lana, who had her transplant maybe 8 months before me as our hair is similar.  I’m looking forward to my hair being longer again.  It’s growing, and it’s still quite curly, much more so than the wavy hair I had before transplant.

In my last post I mentioned how happy I was to return to work and celebrated my one year “birthday” there.  Now I’ve resigned my position and am working out my 30 day notice.

I have shingles.  Well not anymore, technically now I have PHN- post herpetic neuralgia.  Both are incredibly painful.

The second week of September I had what I thought were muscle spasms in my back-  I thought it was an MS symptom of spasticity.  So I took some baclofen.  Then the spasms stopped but then my back was just hurting.  I thought I had a tight muscle so I went for a back massage- the massage therapist said “I don’t feel anything” and I insisted it was there.  A couple days later my back hurt so much it took my breath away.  I started alternating the heating pad and cold packs for a couple of days without relief.  I thought maybe I had a UTI and took a home test- negative….since the area of my back was my kidney I thought maybe it was my kidney.  I  decided I would go to urgent care the following day, Sept 18th, with a friend.  I didn’t sleep well and at 3am I got up to look at my back as I felt I surely had a bruise or something….and that’s when I saw the shingles.  I gasped and thought to myself “OMG that looks like shingles!”  Working with the elderly I’ve seen them before.  Then I remembered I had the heating pad wrapped around me and decided I must have burned myself.  I was terrified that I could have shingles as I didn’t want to reactivate my autoimmune system to become overactive again.  In the morning my amazing friend Kim took me to urgent care.  My urine came back fine- not a kidney issue.  I lifted my shirt and showed the nurse practitioner “oh see I also burned myself with a heating pad” and she said “no, you have shingles.”  That was not what I wanted to hear.

She said to take a pain reliever.  I did that for a couple days but the pain became unbearable- it feels like my skin is on fire and has glass shards sticking out of it and it is sore yet numb at the same time….just clothing touching my skin was unbearable.  I had to work from home for a couple weeks.  I was taking more than the recommended dose for Aleve- like twice the recommended dose.  I called my primary care doc and asked for gabapentin as I knew it worked for me to numb my nerves a bit as I had used it during MS issues.  She prescribed 300mg at bedtime.  I tried to deal with that for a week in addition to the Aleve and it wasn’t working.  I went to see my primary care doctor on Tuesday of this week and she increased the gabapentin to three times a day as well as some lidocaine patches for pain.  The increase in gabapenin and the lidocain patches help tremendously.  I was able to return to work yesterday- for now.

I had promised myself when I started my job that if I should develop shingles, or anything that could cause my autoimmune system to return to an overactive state that I would quit and find a new occupation.  I love what I do.  I’ve been working with seniors running assisted living facilities since 2000 which is the majority of my career.  But it can be stressful and stress is very much the enemy of MS.  When I informed Dr. Burt’s office (Northwestern clinical transplant doc) of the shingles the first question the study nurse asked was “have you been under stress?”

I gave my notice to my boss who has been nothing short of amazing.  My last day will be October 24th.  I’m not sure what my future holds after that.  I enrolled in a course toward my MHA (Master’s in Healthcare Administration) degree and will do that online while I recover and figure out what I can do next.

When I reported to my HSCT 2016 Summer group that I had shingles I was amazed at how many others did too.  I checked with the larger HSCT veteran community and some had shingles that cleared up and others get occassional pain while others are still in pain long after the shingles are gone.

I’m sure this is part of the “rollercoaster” we hear about.  It’s a painful stop on the ride.

My advice to those going though this is to minimize your stress- at home, at work, in life.  Just when you think you’re in the clear….something happens.  Or not- we are all different.  MS is a “snowflake” disease- no two cases are exactly the same.  And no two HSCT cases are exactly the same either.

If you know someone with an autoimmune disease such as Multiple Sclerosis, Scleroderma, Stiff Persons Syndrome, Devic’s, etc…..contact Dr. Richard Burt at Northwestern Memorial Hospital in Chicago or look at clinicaltrials.gov to find a clinical trial.

Happy to report I FINALLY feel pretty good!

It’s been a long road and a crazy roller coaster ride.

When I last updated 2 months ago I talked about being diagnosed with hypothyroid- the nature-throid TOTALLY cleared up my hip and joint pain!

I’ve also been going great with the bio-identical hormone, I take it BID (twice a day) with the acyclovir that I’m still on.  No menopause issues here anymore.

I had some really bad vertigo occur early this month….I rolled over in bed and it felt like tidal wave was knocking me over.  I tried to sleep it off and couldn’t so I fumbled my way into the kitchen to grab to anti-vert to try to stop it.  When I went into the bathroom I had to grab the towel bar to keep myself from falling because it felt like my condo was tilting as if on a ship.  I went to an ENT and he diagnosed it at BPPV- Benign paroxysmal positional vertigo.  This was a relief because I was afraid I was having a relapse!  The treatment was very simple it’s called the Epley Maneuver which involves tapping on the bone behind your ear by P/T professional while in different positions.  His nurse actually did it and it only took one treatment and it was cleared up.  I’ll still go back to see the ENT doc in a few weeks for a follow up.  I had to go back on diazepam in addition to the antivert and was taking max doses of both…..but am now off diazepam and taking half max dose now which is 25mg of antivert BID.

Then there was the dental issue.  After HSCT I lost a filling and I thought “no big deal I’ll get it replaced at my next visit…” well, it was a big deal.  Apparently the tooth got infected and decay/infection spread to the next tooth and I had to get on antibiotics immediately and then a week or so later TWO root canals!  So let that be a lesson to those of you going thru HSCT- take care of your teeth and if you lose a filling get it fixed.  Immediately.

I also decided to send a few strands of hair in for an allergy test.  I figure I want to get everything solved at once.  The test was from  from https://allergytest.co/ (notice it’s not .com, it’s .co.).  They tested against 600 food items and provided a report for those I have sensitivities to.  They also tested against non-food items (I forget how many, like 300).

The most interesting information though, was what was lacking in my system.  They provide a nutritional deficiency report testing my hair sample to 80 nutrients.  I was deficient in 4:

Ascorbic Acid (Vitamin C!!!)
Assists: Atherosclerosis, Cancer, High blood pressure, High cholesterol, Infections
Supports: Adrenal gland, Circulatory system, Gums, Immune system
Sources: Asparagus, Avocado, Broccoli, Cantaloupe melon, Citrus fruit, Grapefruit, Kale, Lemon, Mango, Mustard
greens, Onion, Orange, Papaya, Persimmon, Pineapple, Radish, Spinach, Strawberries, Swiss chard,
Tomato, Watercress

Omega 6 fatty acids
Assists: Acne, Allergies, Breast cancer, Diabetes, Eczema, Heart disease, High blood pressure, Obesity,
Osteoporosis, PMS, Psoriasis, Rheumatoid arthritis
Supports: Heart disorders, Skeletal system
Sources: Blackcurrants, Brazil nuts, Corn, Flax seeds, Safflower oil, Sesame seeds, Sunflower oil, Sunflower seeds,
Tahini

Pantothenic Acid (B5)
Assists: Anxiety, Depression, Osteoarthritis, Rheumatoid arthritis, Stress
Supports: Adrenal gland, Gastrointestinal tract, Immune system
Sources: Beans, Beef, Blackstrap molasses, Buckwheat, Button mushroom, Cantaloupe, Chicken, Dates, Eggs, Goats
milk, Honeydew melon, Jerusalem Artichoke, Orange, Parsnip, Peanuts, Pork, Potato, Raspberries, Sea
vegetables, Strawberries, Sweet potato, Tomato, Turnips, Watermelon, Winter squash, Yogurt

Phenylalanine (Amino Acid- this made a HUGE DIFFERENCE!!)
Assists: Depression, Parkinson’s, Vitiligo
Supports: Brain
Sources: Beef, Eggs, Fish, Milk, Pork, Poultry, Tofu, Yogurt

Proanthocyanidins
Assists: Atherosclerosis, Heart disease, Free radicals, Inflammation
Supports: Circulatory system
Sources: Blueberries, Blackberries, Cherries, Grapes

I’ve been adding one supplement a week.  I haven’t yet added the B5 or Proanthocyanidins yet.  But the Phenylalanine is amazing….I have more energy, no food cravings an little appetite.  It’s helped me focus and get things done.    I’m so glad I took this test to figure out what was lacking in my system because it truly makes a huge difference in how my body functions by adding the supplements.

I’m back at the gym a few times a week and walking my dog more.  The weather was beautiful for a couple of days in Chicago it actually reached 70 a couple days ago- in FEBRUARY.  I took my dog on a long walk around the neighborhood.  This is my dog Zoe and you can see the Chicago skyline in the background:

For those of you who are fans of Chicago Fire and Chicago PD we passed those sites on our walk too.  They are very close together and I realized there is a closed off street separating the two buildings which makes me wonder why they don’t keep the film crew trucks there instead of blocking the street….oh well.  It’s like living on a film set in my neighborhood sometimes.

This is the station where they film Chicago PD (just the outside I don’t think they film inside)

And this is the Fire Station where they film Chicago Fire (and also my polling place):

So….next steps for me in March are to follow up with the ENT doc, follow up with my neurologist for a RETURN TO WORK letter!  Yes, I plan on returning to work soon! And I follow up with my integrative medicine doc to see how my thyroid is doing.  He had me come in for labs once since our initial visit and increased my dose of nature-throid as my thyroid was still hypo (slow).

In April I’ll be going to see Dr. Burt for my one year visit so I’ll be posting about that in April.  My one year birthday is actually 6/6/16 but my insurance coverage under COBRA ends at the end of April so I’m going in early.

For those of you considering HSCT- read as much as you can about it, and if your medication has failed you try it if you can.  It’s only available in the US in Clinical Trial but you can seek treatment in other countries.  It’s 100% worth getting your life back.

I realize the MS Walk is coming up to raise money for the MS Society.  I am not supporting the MS Society as long as they do not recognize HSCT.  They make it sound very scary and life threatening when in reality nobody in Dr. Burt’s study with MS has died and nearly everyone is in remission and most of us have had a reversal of symptoms and we are all off some or all of our medications!  There is something very strange happening with the National MS Society in the US and Dr. Burt’s trial.  They talk about the others but don’t highlight the amazing success we have RIGHT HERE.  They also do not assist those who are unable to obtain HSCT, who were accepted for the study, with insurance denial fights.  They have promised me that they are putting something together but it sounds like it’s a “do it yourself” type thing which is not the advocacy I’m looking for.  So, while the MS Society does do some good things, they do not recognize that the closest thing to a cure, many call it a cure, as it stops the disease in it’s tracks and reverses symptoms for many…..which are the first two criteria they claim to fund research.  The United States MS Society has NOT funded a clinical trial for HSCT.  Canada has.  American greed and the United States MS Society is no exception.

So….for those of you who walk, thank you, but honestly, it’s not helping as much as you think it is.

A few of us are working on that fight now- stay tuned and I’ll be asking everyone to help with some advocacy on behalf of HSCT patients and those who wish to have HSCT.

Thank you everyone for your support and I’m looking forward to posting my next post in April after my next MRI showing again I’m in remission!

Ellie